Monday, 15 January 2018

There
are many times in a person’s life with dementia that are described as pivotal.
Often these are the difficult, crisis occasions that create the negative
narrative that is so commonly associated with dementia. But after my recent personal experiences of dementia in my wider family, I’ve found myself
reflecting on what I feel is arguably one of the most, if not THE most pivotal moment in a person’s life with dementia - their diagnosis.

As I’ve
written about many times, my dad’s diagnosis took ten years, involved a
catalogue of missed opportunities, a crisis that could have killed him, and
ultimately when we finally heard the words that he’d been formally diagnosed
with dementia, they came when we visited him in hospital and found his bed
empty. The nurse said he’d been moved to the Elderly Mentally Infirm (EMI) Unit having been diagnosed with dementia.

Fast
forward 14.5 years and for most people in the UK things have improved. We now
have memory clinics, and the voluntary Memory Services National Accreditation Programme (MSNAP) from the Royal College of Psychiatrists that involves regular peer
reviews (I am an MSNAP Peer Reviewer). Multidisciplinary teams staff these
clinics, bringing a wealth of different skills and experiences that are vital
in giving patients the very best diagnostic experience.

But not
everyone has the type of experience I’ve seen in some of the best memory
clinics in England, and when the experience isn’t good the effects last long
after the doctor has delivered their clinical judgement. Listening to the
diagnostic experience one of my in-laws had in South Africa last year left me with a
mixture of sadness and anger - no person should have such a poor experience
given all of the best practice examples available from many different countries (including the UK), and bear in mind that we are talking about private healthcare here, where the person is the very definition of a consumer.

My
feelings left me reflecting on what a good experience really looks like from
the person’s perspective, and I want to share those thoughts with you for this,
my first D4Dementia blog of 2018. Whether you are a person concerned you may be
developing dementia and could be seeking an explanation for your symptoms in the coming months, a relative
worried about a loved one who you may go on to accompany to diagnostic
appointments, or a clinician responsible for any part of the diagnostic
pathway, I hope this list will help you.

1)The
person must own their diagnosis

This is
the singularly most important aspect of diagnosis. Dementia remains stigmatised,
particularly amongst older generations who still remember the asylums and
labels of ‘madness’ that may have formed their viewpoint of dementia many years
ago. The person needs to be personally involved and addressed at every point in
the diagnostic process, and when the final verdict is delivered, it has to be
communicated to the person first and foremost, in the most appropriate way for
that person and by the most appropriate clinician. Anything less than this and
the risk of the person not believing or trusting in the diagnostic process and
the outcome of it will massively increase, which in turn can have long-term
ramifications.

2)Family
can help... and hinder

It’s
often said that a dementia diagnosis isn’t just given to the person, but to
their whole family and wider network. Whilst as a daughter whose father lived
with dementia I would agree with that, there is always a temptation to involve
family members in the diagnostic process more than the person themselves,
sidelining the very individual who is potentially living with dementia. Clinicians often choose to speak to family members
because it’s perceived as easier and the information being gathered is seen as
more reliable. At best that’s insulting. At worst it pits family
members against their loved one with dementia. Marginalising the person is
likely to leave that individual feeling that everyone is ganging up against them, which is a recipe for destroying relationships at the very time when they need to
be at their strongest.

3)The
diagnostic process must be fair and thorough

For a
person to believe and trust in their diagnosis, the process must be
comprehensive, transparent, never rushed and totally individualised. Attempting even preliminary investigations when the person is
unwell with another condition or infection is, in my view, utterly
unacceptable. The person must be at their best to know in their own mind that
they are able to give of their best in tests. Equally from a clinical
perspective, you want an accurate measurement of the person’s baseline or, if
you are tracking from a baseline, an accurate picture of where the person is
now. Diagnosing just to tick a box, earn a financial reward (as has been available in the past in England) or prescribe certain drugs is never, ever
justifiable.

4) A
few words that change a person’s life

I’ve
been very lucky in my work with MSNAP to hear from many people living with dementia
and their family members who’ve had nothing but praise for the doctors, nurses,
therapists and advisors who they’ve encountered during their diagnostic
experience. How the diagnosis is delivered is a key marker we look for during
MSNAP peer reviews and with good reason. An empathetic clinician who delivers
the news of a dementia diagnosis with kindness and clarity, tailoring the level
of information to the person, understanding what a momentous moment it is for
the person, and allowing time and space for their carefully-chosen words to sink
in is a clinician others less adept in these situations could learn a huge
amount from.

5)
Don’t abandon the person and their family

I
couldn’t write a blog about diagnosis and not touch on one of the aspects of dementia
care and support that I am most passionate about - post-diagnostic support.
Even when a diagnostic process has fulfilled all of the aspects I’ve outlined above, the weeks and months after the person’s diagnosis can leave the
individual and their family feeling abandoned and having to cope alone. This is
when the risk of depression for all concerned can exponentially increase, and
life can begin to unravel pretty rapidly and most definitely not in the
direction of ‘living well’. Accessing peer support (including through DEEP and DAI), carer support, making environmental modifications, exploring rehabilitation, reablement and therapies to combat distressing symptoms are just a few ways to ensure that
a good diagnostic experience is followed by an equally positive post-diagnostic
experience.

About Me

I'm a campaigner and consultant, writer and blogger. My dad had vascular dementia for approximately the last 19 years of his life. I aim to provide support and advice to those faced with similar situations, inform and educate care professionals and the wider population, promote debate and create improvements in dementia care.